That's about it really.
Ds is a mess, school was a disaster again today, they are still not doing remotely what they say they are and should be doing, are still doing things they most definitely shouldn't be doing and yet again have given his self-esteem a massive kick in the guts today. On top of that it's problem after problem with the TA they've assigned to him and he is too scared and totally refusing to tell anyone other than me how badly she's affecting him. 
He came out of school today full of anger, frustration and despair and I know just how he feels.
My heart is breaking for my poor boy. I feel so worn down, like I can't even get up off the sofa. I just want to curl up and pretend it isn't happening, because I know I can't do anything about it all - nothing I try works - I am continually banging my head against a brick wall with all my exits blocked. BUT ignoring it isn't an option is it, I have to fight and stand up for him, because if I don't, who will?
Sat here in floods of tears, waiting for dh to finish bedtime routines so I can fill him in on today's disasters, but knowing that he won't fully get it even if I do. Marriage is falling apart as well at the moment and I no longer feel I know or can trust my dh, which is heartbreaking after 25 years together.
So sorry for the self-pitying post. I just needed to let it out somewhere.
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SN children
Desperately in need of a honk and a hug :(
moosemama · 21/11/2012 20:16
Thank you Dev. It's kind of you to reply.
I know I am wallowing, but all my fight seems to have left me today.
Thanks guys. I know all I can do is fight each fight and not tackle the whole war in one go, but seriously, tonight I don't even have enough fight to face the school run in the morning. I need to deliver a reply slip to the school office and ridiculously I am too scared to go in there.
No change of getting him to take tomorrow off - it's cricket club. 
I haven't gone back to IPSEA, because I think I know what the options are and basically it's a case of getting the LA to enforce, or if not we're back to judicial review to force them to do it. First step is the meeting with inclusion boss and teacher, LEA officer, EP and SENCO, but while I'm waiting to hear when it will be and who has agreed to attend things just keep on getting worse - and of course there's absolutely nothing I can do about the teacher's attitude.
You need a break as well, you have been in pain for quite a few months now, constantly, on top of the ongoing neuro queries, so it must be exhausting for you on a physical level
This reply has been deleted
Message withdrawn at poster's request.
HONK and > from me.
Hope things get better soon. Some days feel harder than others, I know. My ds was at home today because of all the anxiety . I think it's the guilt that makes you feel worse, thinking that you should be doing more to help them but knowing that practically you are already doing as much as you can. Tomorrow is another day.....
Sanna, unfortunately not. One of Ds's 'rules' is that he goes to school every day and there are things about school that he would miss, not least of all his best friend. I have discussed homeschooling with him a few times, but he flatly refuses to even consider it.
As the head of the inclusion team said to me yesterday, ds is one of the most severe 'black and white' thinkers they have on their roll and it makes him incredibly hard to deal with at times like these.
Thank you for the hug. 
Hi TLP. I know and I'm really struggling neurologically at the moment, not to mention my flipping foot - well leg really. I had a really bad neuro episode while out with the kids last week that then got worse when I arrived home. I know I should have contacted my neurologist straight away, but I just couldn't, I had enough on my plate already and my usually supportive dh has decided to have his midlife crisis in the middle of all this and all but abandoned me to my fate, despite seeing the state I was in (unable to stand, talk or see properly). He said he assumed it was my medication, but seriously, I've been on the medication for months and he knows it doesn't do that to me. I think he's just had enough of me being constantly ill and is struggling with staring the reality of a future as dh in the face.
Hi moose sorry you are having to go through this.
I go through difficult patches with DP and have recently told him that Dd3 and I are going to leave if he isnt able to get on board with at least some of the strategies that work so well with Dd3.
I have big trust issues and and inclination towards walking away from complicated situations.
I really feel for you, you need your DH to be with you ATM not pulling away from you
Am honking, ((hugging)) and flapping like mad for you.
No, unfortunately not. We're talking emptying the cache on the computer and being glued to his phone secretive here.
Can't tell you what I confronted him about on here really, but it wasn't good and he didn't have an excuse.
Mum is off for a couple of days for her birthday as of this evening.
Dh and I are supposed to be going away for the weekend with all our uni mates to a boutiquey hotel and rock night this weekend, but I seriously don't feel like going - I don't want to be around him to be honest.
Head of inclusion is fab. We spent an hour on the phone yesterday, loads of off the record stuff and lots of support from her and she's offered to round up all the professionals for the meeting to end all meetings, as they are all more likely to go for her than they are if I ask. Basically she shares our anger and frustration but she too is pushing the limits of her power to make anything happen, not least of all because we've between us ascertained that the school has fed her a load of lies (often different to the ones they've fed us). She and his inclusion teacher are as upset as we are at how much damage the school has done to ds in such a short space of time, especially after they and we have worked so hard over the past three years to get him to where he was last school year (ie happy and achieving).
Ineed, thank you. I have never had trust issues with dh - we've been together since we were 16 and I always felt we had grown together and I knew him. Seems I was wrong. It feels so much worse because he's the only person I have ever been able to trust in my life and now I feel like that trust was naive and misplaced.
NoHaudin, yes, the collapse was at the garden centre. I had a really bad head all day, but we went to look at the christmas decorations with my Mum with the dcs, as we'd promised to.
I started to feel a bit ill on the way there - assumed it was just a bit of motion sickness, as I have a bit of a sinusey thing going on, but it didn't get better when the car stopped and then I suddenly felt really odd and my head pain got a lost worse. I was trying to tell my Mum that I felt ill, but couldn't get any words out properly and I was conscious of not upsetting the dcs. I am still on crutches at the moment, so with whatever was going on with me I couldn't co-ordinate myself to get to where Mum was and alert her, so I stood there swaying and clinging onto the crutches until she looked up and noticed something was wrong. Then I managed to let her know that I was going to try and head to the cafe (which was very nearby) and she should stay with the dcs, give me chance to recover and then follow on. I struggled to get there as my left leg (the one that I have CRPS in) kept dragging and wouldn't work. Got to the cafe and it was just so bright and loud and I felt like I was going to hit the deck, so I went in the loos instead and sat on a toilet for a while until I felt slightly better. When I came out Mum and the dcs were searching for me, dcs were oblivious, but Mum was panicked. She got me some water, I had a sit down for a while and then managed to get back to the car. Unfortunately, when I got home I lay on the sofa and within half an hour realised I couldn't get up and couldn't speak without slurring so badly that I couldn't be understood. Mum had an appointment to get to and had thought I was getting better so had left, the boys were on their computer time upstairs and dd was watching tv, so I just curled up and prayed for dh to get home from work quickly (he was due home in half an hour anyway). When dh got home I was no better and he helped me upstairs to bed. I have since found out that he assumed I'd taken mega cocodamol and that's why I was out of it.
I should have gone to hospital there and then, but I missed the opportunity and there's no point if they can't see it happening 'in action' as it were. Also, it seems no matter how bad the symptoms get they are never bad enough for the neuro to class them as serious neurological symptoms.
It was horrible and dh was really unsympathetic and supportive, although to be fair, I had to take mega co-codamol for my foot on Saturday and he was shocked when he realised I could hold a full on conversation about ds1 and school etc an hour and a half after taking them. So obviously the penny dropped that it couldn't have been cocodamol on Thursday after all.
Because of my age, I know quite a few men who have done the whole Midlife crisis thing.
I am not saying this is what your DH is doing but with the new job maybe he is just feeling like a change.
When I am stressed I see DP clicking off pages on the web and texting/whatsapping more than ususal and I make 2 and 2 add up to 22.
I know I am doing it but I can help myself.
You are under a huge amount of stress ATM pls try not to jump to conclusions.
Me and DP are meant to be together but sometimes we both go into self destruct and neither of us knows how to stop.
Luckily so far we have been able to sort it out before it goes too far but when there are SN's in the family it just makes it all soo much harder.
Please try to be kind to yourself
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Kidneys seem ok now thanks Madwoman. S'pose at least something got better! 
Yep, Mum is supposed to be having the dcs this weekend. To be honest I considered sending dh away, the dcs to mums and having the house to myself for the weekend.
No, I haven't contacted the neuro it just seemed pointless after the fact. Mum and dh have both told me to contact her, but I just can't face it. 
Yes, dh's Saturday revelation was a plausible-ish excuse for that particular let-down - sadly not for others.
NoHaudin, it was video evidence of one of these attacks that launched the whole MRI (which found new lesions), lumbar puncture (which was negative) and evoked potentials (also negative) thing this time last year - although the attacks were actually in the spring and I hadn't had one for months by the time the tests took place.
They told me I was basically down as 'probably MS' and that wouldn't change until either I as dx with something else or there was more definitive clinical evidence for a full MS dx.
Then suddenly for no apparent reason, at the last appointment they did a turnaround, put me on 12 month instead of 6 month review and said def not MS - haven't a clue what it is - see you in 12 months. They did say I should contact them if I have any new 'serious' neuro symptoms, by which she said she meant, weakness on one side of the body or problems with the function of bladder or bowel. I'm guessing that, as I've had this type of attack before and the symptoms are all documented - nothing new, that there's no point in contacting her again. She said if nothing more significant arises, they will look at repeating the tests in two years. Well, actually they won't because I am NEVER having another brain MRI again in my life - two is two too many (seriously claustrophobic).
Lots of people, including my physio have suggested the Complex Regional Pain Syndrome, is connected, as it is a malfunction of the nervous system and that I should inform her that it's happened.
Oddly, when I was in hospital for blood tests during my recent kidney infection I saw her and thought I should perhaps go up and speak to her. Unfortunately I just felt too ill to get up and walk across the corridor to where she was standing.
Personally, I have feeling it's all connected to the hypermobility/EDS stuff we have going on in the family. Apparently my lesions are too vascular to be typically MS, but not vascular enough to be TIA or dementia related. 
The vascular element raises questions for me about EDS, especially as some of the symptoms of CRPS are also vascular in origin.
Unfortunately I think it is all such a tangled mess of connections that there's little hope of the NHS unpicking it all and coming up with potential treatment/solutions.
Ineed - he admitted he cleared the cache because he didn't want me - or the dcs to see what he'd been browsing - on the family laptop, while I was potentially seriously ill in bed upstairs! 
Then I think you need to spend some time together. Without the dcs. And knowing that they are with someone who gets it. So that you can concentrate on what is going on with you two...
It isn't a dictat, obv. but it might help you get your head straighter one way or another.
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